I hate making plans when you really have no idea what's going on, but that seems to be the way things go around here. So we've started making plans.
We will not be flying home on Saturday like we had originally planned. I am getting a spinal tap Friday afternoon, and will highly doubt I will be up for flying the next morning. I also meet with Dr S Friday morning to find out exactly what treatment she wants to do for my eyes and she had said the other day she wanted to start it ASAP. Our insurance has approved one of my chemo drugs (the other 2 we applied to get for free from the pharmaceutical companies and should know by Friday if we'll get them free). At that point I will probably start my treatment next week.
So, all in all, we really don't have any idea exactly what's going on and yet we are being forced to make plans as though we do. My parents are flying out here Saturday morning, my mom is going to stay with me during my treatments since Joe has to go back to work. We've extended our hotel stay and our rental car. We are waiting to hear back about an apartment for my mom and I to move into for the next 2-7 months. And we need everything solidified before next Wednesday when Joe and my dad will fly home. We're making these plans in the hopes that everything doesn't fall through.
Some good news we got today, after seeing eye specialist #4, Dr W, she said my CAR is very very early stage and she is very optimistic at this point because other than my night blindness they can still correct my vision to 20/20 with lenses. That means I have very little vision loss so far. Basically, my blind spots are very large in each eye, but the other eye can still compensate for it.
Some other possible good news happened when Joe got an unexpected call from Dr H back in Ohio (who is on vacation and called from his house) That he feels confident if MD Anderson can work it out and our insurance plays nicely, that after my first cycle (2 months) I could get my remaining cycles at the Clinic, which mean I could be home for them! I would just have to fly out here the beginning of each cycle to be evaluated.
And so we keep making plans, not really knowing what exactly is going on.